ATHN Data Quality Counts is helping HTCs enrich the ATHNdataset.

The promise of using data for research, surveillance, and quality improvement relies on data that is complete and accurate. ATHN Data Quality Counts provides the critical funding needed to build data management capacity across the network of HTCs and enrich the ATHNdataset.

The application phase of Round 11 of ATHN Data Quality Counts is now closed.

Round 11 of ATHN Data Quality Counts started September 1, 2019.

Thank You to Our Partners
ATHN has invested over $5.2 million through the Data Quality Counts program to support our ATHN-affiliated HTC network. We are grateful to The Hemophilia Alliance, The Alliance Pharmacy, and the Indiana Hemophilia and Thrombosis Center for making Data Quality Counts possible through their generous funding support.

As a competitive award, funding is based on overall strength of the application, including demonstration of the ability to fulfill two required ATHN’s priorities and, if a previous awardee, history of progress in data management. Successful applicants receive an initial $2,500 for base funding, plus $50 per patient after the core data elements are entered into the ATHNdataset or $100 per newly authorized patient with rare coagulation disorders that are enrolled in the ATHNdataset.

Applicant organizations must:

  • Be an ATHN Affiliate
  • Use ATHN Clinical Manager

All recipients are required to address these two priorities:

  1. Secure ATHNdataset patient authorizations
    As in previous cycles, all patients with bleeding and thrombotic disorders are eligible. Priority populations for this cycle include:
    • Factor VIII or IX deficient patients with a focus on:
      • Previously untreated patients
      • Patients born after January 1, 2010
      • Patients with a history of or at high risk for or who currently have an inhibitor
    • Patients with Type 3 von Willebrand disease (VWD) and patients with clinically severe VWD requiring recurrent use of factor concentrates
    • Patients receiving non-factor products (e.g., Hemlibra or other non-factor products that may come to market during the reporting period)
    • Patients under the age of 18 years old who have had a VTE and are being treated with direct oral anticoagulants and all pediatric patients diagnosed with a pulmonary embolism
    • Special funding has been dedicated for enrollment of patients with rare coagulation disorders with priority focus on Antithrombin Deficiency, Glanzmann Thrombasthenia, and Factors VII, X, XI, and XIII. Additional diagnoses that qualify for special rare disorders funding include: Plasminogen deficiency; Afibrinogenemia; Alpha-2 antiplasmin deficiency; Dysfibrinogenemia; Factors I, II, and V; Hypofibrinogenemia; and PAI-1 deficiency.
  2. Enter complete core data
    Enter complete core data elements for priority population patients who have been authorized (during this cycle or previously), including but not limited to the following data elements: Primary bleeding or clotting disorder diagnosis; diagnosis baseline lab value; inhibitor diagnosis status; inhibitor titers; HIV and hepatitis diagnosis status; primary medication regimen and dose details; ITI regimen if applicable; surgeries/procedures; insurance category type; comprehensive care visit dates; height; and weight.

    Please download this list of current ATHNdataset core data elements.

If you have any questions about Data Quality Counts, contact